Paula Smejka shares her experiences of caring for her partner after a stroke
When I became John’s carer the relationship between us changed significantly. Although we’d known each other for over five years when John’s stroke happened, we didn’t live together and had been engaged less than three months. My house was completely unsuitable for someone with mobility difficulties so while John was in hospital I moved my 12 year old son and myself into John’s home. Although we’d spent lots of time there with John and his children it felt really strange to be there without him, it felt intrusive to be putting my things into his house without him there with me.
John’s first night home from hospital was, therefore, our first night living together, the beginning of the rest of our life together – it wasn’t exactly as we’d planned! As John couldn’t climb stairs at this point I’d moved my bed into the dining room, it was positioned so that there was plenty of room for John’s wheelchair and turner but for me to get in and out there was quite a lot of climbing involved. This clambering occurred every time John needed something – the toilet, a drink, to get comfortable. While it was lovely having John home, to be with him and to snuggle up to him, all the getting up and down was exhausting and after a few days of my body undertaking all these unusual tasks I ached in places I didn’t know existed!
John has always been a pleasure to care for, he is patient and not judgemental, he doesn’t ask the unreasonable and is considerate to my needs too. But we both miss him caring for me as he did before his stroke, I am a capable woman – I was a single Mum for long enough – but the small kindnesses that us humans show each other were suddenly missing. John couldn’t bring me tea in bed, he couldn’t buy me little surprise presents and he couldn’t help me when I was struggling with something practical. All of a sudden John needed me as he had never needed me before, I was very uncomfortable with this as I didn’t want to be needed, I wanted to be wanted – I wanted to know that even now, when we’d been thrown together 24/7 (and I was, perhaps, a little grumpy) he still thought I was the girl for him. I needed to know that if he woke up ‘recovered’ he wouldn’t trade me in. I became very needy and clingy, I was often asking for reassurance of my position. It was more than two years before John had recovered enough to ask ‘is there anything I can get you’ – I was so shocked and delighted the first time he managed that sentence that my mind went blank, I couldn’t ask for a drink as he couldn’t carry one, I needed to think of something easy to reach and carry but something he knew I would like. I suddenly remembered the chocolate bar on the kitchen counter and asked for that – I have never enjoyed chocolate so much in my whole life – what a milestone moment!
It saddens me to see how our relationships with other people have changed, John has aphasia after his stroke (a communication disability which affects his ability to speak and write) but inside he is still the same intelligent man with the same thoughts and feelings. I don’t know if it’s the aphasia or the overall situation which make people speak to John and I as if I am in charge, as if I make all the decisions. Workmen tend to talk to me although it is John’s house they’re working on and John’s money they are being paid with. John’s children ask my permission for things, even though it’s their Dad who makes their rules, it’s their Dad’s bike they’re wanting to borrow.
As John makes tiny recoveries and we adapt as a couple and a family, we are finding ways to have normal relationships, John is less dependent on me and he is discovering all sorts of things he can do for the rest of us. We were married, five months after John’s stroke, as planned and I love being his wife, it’s different to what I was expecting when I accepted his proposal, but I’m sure reality would never have matched my expectations. We don’t have many of the luxuries of other couples, like conversation, dancing and equality but we do have one very precious thing that helps us enjoy each other that many other couples miss out on – time together.
I became a carer in quite unusual circumstances, but that simple decision to care for the man in my life resulted in my complete loss of independence. As he became dependent on me for many of his needs, I became completely dependent on him for many other things.
When John’s stroke happened we didn’t live together, we’d been engaged less than three months. I owned my own home, I worked full time to support myself and my 12 year old son and I paid regularly into my pension to give myself some financial security. I also had something of a social life outside of my relationship with John, I spent time every day chatting with people at work, I could ‘pop’ down to see my old friends where I grew up – a one hundred mile round trip but they’re worth it, even if just for one cup of tea – and I spent a lot of time at the gym, seeing the same people every time, chatting and being sociable in the sauna after our various exercise regimes.
When I asked John, did he want me to stop work and look after him, I perhaps didn’t consider all the implications – I just desperately wanted to make things easier for him – but on leaving work I suddenly had no salary, I sold my house and moved in with John and I no longer paid into a pension. That one letter of resignation completely removed my financial security, both current and future. I am now completely reliant on John and his pension for all of my needs – and the needs of my son. He is a lovely man and would deny me nothing, but I wonder how many other carers in my position go without simple things as they are reliant on someone less generous. I’m not talking shoes and handbags, I’m talking about really simple things, prescriptions, dental treatment, glasses.
It’s not just my financial independence that disappeared when I became a carer, my social life ground to an almighty stop at the same time. I was never particularly close to any of my work colleagues but I soon missed them. Just those few minutes chatting and laughing at the coffee machine or photocopier is a little bit of human interaction, hearing other peoples moans and worries helps you to put your own into perspective. I had worked in big, lively offices my whole adult life and the lack of all those people in my life left a massive, gaping hole. I missed my friends too, the restraints in their own lives meant they couldn’t easily visit me and now I was at home with John I couldn’t make the two hour round trip for a quick cup of tea any more. John’s difficulties early on were quite severe and leaving him just wasn’t an option, when we were eventually comfortable enough with me popping out for milk without him I ran all the way to the village shop and back in order to be as quick as possible. As time has gone on, it’s perhaps not John’s needs that are preventing me from getting out and about, but my own insistence that we are a team and I will not take for granted anything that John’s stroke snatched from him. He no longer has the full and active social life that he had before his stroke so I support him by not rubbing my own social life in his face. We do both spend some time with our friends, both as a couple and independently of each other and we cherish these moments, they are something to remember as well as something to look forward to.
If I were able to rewind the two and a half years to that simple decision to care for my man, would I make the same decision again, knowing what I know now? Of course I would, I love him to bits and the alternative’s unthinkable. When I think of my financial insecurity it scares the living daylights out of me, so I don’t think about it. I have discovered amazing new ways to keep in touch with my friends, email is free and has no time boundaries, text is instant for a quick pick me up, making time to meet up takes planning but is completely worth it. I am more aware now of strangers in supermarkets, I am that crazy lady who talks to you about the state of the bananas, but I am also the one who spends time chatting with a stranger who wants to chat because I know I might be the only person they speak to that day and that interaction is a basic human need.